Monthly Archives: September 2012

Saskia Digest – September Edition

Enjoying a good book

So here it is, my much promised post about Saskia. Looking back the last time I wrote a Saskia post was in May – that time seems to have gone so quickly, and she has changed so much [insert other typical parent clichés here as you please].

Last time I wrote she had just cracked the art of crawling. Well she has now progressed to almost walking, via ‘bear walking’ (on hands and feet) and ‘cruising’ (standing upright but supporting herself against people, furniture, etc). Cruising was followed by unaided standing, and in the last week or so this has progressed to her first tentative steps. She is still a bit unstable with the walking, so crawling, bear walking and cruising are still the primary modes of travel – but she is getting more confident each day.

Being able to stand has brought a whole new realm of the house within her reach – bottom shelves, low tables, CD racks, etc. Posting things through the cat flap seems to be a favoured activity – usually potatoes and shoes. As you can see from the photo below, she also takes particular delight in removing my CDs from their nicely alphabetised by artist, and chronologically within artist, filing system (I am a fun person to be around, honest).

So we have had to do some child-proofing of the house – this has ranged from the traditional (stair gates) to the improvised (a wooden board strapped to the front one of my CD racks with car roofrack straps – it might not be pretty, but it certainly is effective!).

Wrecking Daddy’s nicely alphabetised CDs

That’s actually Marilyn Manson she is reaching for in the picture above – showing early signs of inheriting her Daddy’s good taste (must keep her away from Mummy’s horrendous Adele and Amy Winehouse CDs in case she gets indoctrinated into the world of rubbish music).

On the subject of music, she has begun to show off her dancing skills. She has a little ride-on car, which plays various tunes when you press the buttons on the dashboard (kiddy tunes, not Marilyn Manson). She likes to stand next to the car, press one of the buttons to start a tune, and then ‘dance’ next to it. Her dancing mainly involves shaking her hips back and forth, and smiling gleefully at anyone nearby.

It’s very cute to watch, and fascinating that she seems to have this inbuilt desire to dance when she hears music. As far as we can tell she’s not learnt this from anyone else (her Daddy isn’t much of a dancer, and we haven’t taken her clubbing yet), which suggests it’s an innate characteristic present from birth. Interesting, in terms of nature and nurture.

On the swings at the park

Moving on, she has also become a regular at the local play park – we’re very lucky to have the recreation ground right behind our house, so there are plenty of opportunities for park trips. She is a brave little thing, and will go off of her own accord, crawling or cruising round the park, interacting with the various park ‘furniture’, and watching the other children. Whilst still a bit small for most of the activities, she particularly enjoys the swings and the slide.

We recently had an afternoon out at Whitstable Castle, which has a great play park – including a ‘big’ slide which she very much enjoyed throwing herself down. Sally would sit her at the top and she soon got the idea of shuffling herself off to launch her descent – while I knelt at the bottom, repeatedly messing up trying to focus the camera on a fast moving baby (you can see my best effort below).

Wheeeee!!

She has also recently started using her first word – that being ‘uh-oh’. This seems to translate into grown up as ‘oh dear, I appear to have dropped s0mething’, as an item of food or her water bottle goes over the side of the high chair. When at her very cutest she says it with pursed lips, while looking back and forth between you and the dropped item.

However, ‘uh-oh’ seems to be a very versatile phrase, able to be used preemptively as well as after the event – translated into grown up as ‘oh dear, I am about to drop something’. It’s highly amusing to watch her look at you, say ‘uh-oh’, drop something, then look at you as if it were an accident. She’s going to need to work on her timing a bit if she expects us to believe it was unintentional!

Sharing the driving on the way back from the Lake District

She still goes swimming, although we take her to the local pool these days for ‘freestyle’ swimming, rather than the structured class at Whitstable that we used to go to. We found that she wasn’t really enjoying the Whitstable class – it consisted of a number of activities, two of which involved being dunked under the water, which always seemed to upset her. I understand the logic behind getting the babies acclimatised to water, but I’m not sure they need to be dunked under at six months old to achieve that. I have always been confident in the pool or the sea, but wasn’t dunked under the water as a baby (back in my day… grumble, moan, grumble, etc).

Eventually, as she got more aware, she seemed to enjoy the whole class less and less. So we decided to just take her to our local pool instead, and she seems to have a much better time. She is able to do things at her own pace, seems much more confident, and enjoys it a lot more.

Teaching her Aunty the finer points of boating in the Lake District

She has been busy growing teeth over the last few months – now sporting six fine examples of… ermmm… teeth. So as not to spoil her good looks she has so far managed to grow her teeth entirely symmetrically – she has the middle two at the bottom, and the middle four up top.

As of a couple of months ago she has also been attending nursery. She started going one day a week, but we recently changed this to two half days. There were some settling in issues initially, but these seem to have been overcome in the last few weeks – the switch to half days has possibly helped with this. She now seems to really enjoy her nursery days, and is bonding well with the nursery staff and other babies.

Sally has become mildly obsessed with vicariously trying to live her own dreams of becoming an artist through Saskia, buying her pencils, felt-tips, paints, and play-doh. Progress has been somewhat limited, with Saskia yet to fully appreciate the difference between the two ends of a pencil / felt tip. Her best work so far has either been on her own face, tongue and clothing, or on the spare bedroom wall.

Some of the observant amongst you might have noticed that she has short hair in some of her photos. Unfortunately we recently had to cut all her hair off, as she had developed a habit of pulling her own hair out and eating it. It actually started with the cat’s hair, then Daddy’s chest hair, and a fluffy cushion, before moving on to her own hair. Before long she had plucked the top of her head to the point of almost being completely bald.

We really didn’t want to cut off her lovely blonde curls, so tried everything else we could think of; hats (which she took off); swim caps (which she also took off); a stern ‘no’ (which was either too late or ignored); giving her other things to divert her attention (which she ignored or lost interest in).

So eventually we admitted defeat, and decided that the only way to break the habit was to cut her hair off. So far she seems to have stopped reaching for her own head – but will still go for the cat, cushion, or Mummy and Daddy’s chest or arm hair (for clarification, ‘chest hair’ refers to Ben only, not Sally). I guess we will keep her hair short for a while, until we think the habit is broken.

As it is we have got used to her without her hair, and still think she looks gorgeous (but we’re her parents, we would think that!). You can make your minds up from the photo below.

Saskia finds treasure at Whitstable Castle

Finally, saving the most important news until last, I would like to congratulate Saskia on completing her first full orbit of the sun – or in other words, becoming one year old on 26th August! She had a great day on her birthday, with a meal / little party with family at our local pub, followed by a trip to the park to show off her swing and slide skills. She was on top form all day, and really seemed to have a ball, which was great to see. She particularly enjoyed playing with her older cousins, Molly and Robin.

I have included a few photos from her special day below…

… enjoying her birthday lunch at The Phoenix pub…

… time to unwrap some presents…

… blowing out the candle on her birthday cake…

… with cousins Molly and Robin (and an attention seeking fluffy dog)…

… more present unwrapping back at home…

… and finally, playing with her birthday balloon.

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Thank You!

Just another quick post from me to say lots of huge thank yous to all of you who donated to the the Moonlight Walk. I’d love to write to you all individually – and I might yet when I get the time – but in the meantime I hope you won’t mind a group thank you. I’d especially like to say thanks to the people who don’t know Ben and I very well or haven’t seen us in years  – it’s really generous of you to give of your hard earned cash for our cause.

I’d also like to thank Janine and Lizzie for making the walk such a jolly experience and for getting their friends and families in on the fundraising. Lizzie should have a special fanfare of her own for completing the walk while being thirty-four weeks pregnant – what a woman!

Lizzie, me and Janine – showing off our medals

I’m just blown away by how much we’ve raised – £1,565 at the last count – amazing! Last time I can remember collecting money for charity was when I was dragging a battered sponsor form around, pestering friends’ mums and neighbours for their 50p’s for the school fun run (making me sound very old and rather slack on the fundraising for that matter) so raising this much money with a bare minimum of pestering has come as quite a shock. Thank you all very very much.

Pilgrims really is a great cause – we were there again yesterday visiting the doctor  – unlike the rushed appointments with the doctors in London where you always feel like you have to speak as quickly as possible to squeeze everything in, we have relaxed half hour plus appointments where we can talk calmly and in detail about all the things that the high powered consultants would probably find a bit dull anyway (but are so important for us) like fatigue, sleeplessness, pain relief etc. We count ourselves as very fortunate indeed at the moment with the team of doctors looking after Ben between St Georges’s, Canterbury Hospital and Pilgrims. And fortunate to have so many good friends and family to support us – all of you.

Thanks again.

Sally

P.S. Really not nagging (honest!) but if you’d been meaning to donate to the Moonlight Walk but hadn’t got round to it, you still can (until November I think) – just go to www.justgiving.com/Sally-Edge

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Some good news at last…

Another post not about Saskia I’m afraid – but I have news I thought you would probably want to hear.

So today we attended the clinic at St George’s Hospital to get the results of my CT scan last week, to asses whether or not I have responded to the new chemotherapy I am now on. As before at the Royal Marsden, if the chemo was proving effective we would carry on with it, if not then we would stop the treatment (no point enduring the side effects if it’s not offering any benefit).

To be honest Sally and I were both expecting bad news – yes, my condition has been improving, but we have been disappointed so many times in the last six or seven months, that we dared not get our hopes up too much.

However, for once it turned out our pessimism was unfounded. After all the previous disappointments I can barely believe it, but for the first time since my recurrence was diagnosed in February, we left a post-scan clinic appointment with (mostly) good news.

I say ‘mostly’ (in the voice of Newt from Aliens – “They mostly come out at night… mostly”) as the scan did show that the disease had progressed ‘slightly’ (said in any old voice). However, there is a pretty big caveat to that slight progression.

When I moved to the team at St George’s Hospital from the Royal Marsden and started this chemo, a baseline CT scan wasn’t carried out for one reason or another (I was pretty unwell, and the priority was just to get me on some treatment). So prior to last week, my last scan was back in mid-May, eighteen weeks ago – this was therefore the only scan available to compare against, to judge whether the disease had progressed or not.

Of that eighteen week period between the two scans, I spent the first nine weeks not receiving any treatment, and generally having a bit of a rough time of it in terms of my physical condition (this was period I mostly spent lying half-asleep on the bed watching endless episodes of Frasier).

Then nine weeks ago I began these new treatments – and since then my condition has gradually improved, and I have been feeling progressively better.

Given the lack of a proper baseline scan at the point of starting the chemo we can only really speculate – but it seems possible that the disease progressed in that first nine week period while I was not receiving any treatment, and that the chemo has elicited a positive response over the last nine weeks, either halting the disease or causing it to regress.

As I say, the above is only speculation, but it seems logical, and fits with how I have felt physically over that time. The doctor also seemed willing to entertain the above theory as perfectly possible.

Either way, despite the slight progression we are going to be continuing with the chemo – for two reasons; firstly, given the uncertainty described above it’s very possible the chemo has been having a positive response; and secondly, I am about to begin another treatment, a cancer vaccine, which the doctor says works very well in conjunction with the chemo I am currently receiving (Carboplatin).

We have been hoping to get this vaccine for a couple of months now, but up to now it has been unavailable. It is not a treatment licensed on the NHS, and is currently going through clinical trials. As we have previously discovered, I would not be eligible to take part in a clinical trial as most do not permit patients with brain metastases. However, I am to receive the vaccine on a ‘named patient’ basis – which basically seems to mean that on recommendation of my consultant I can receive the vaccine outside of a trial environment, and free of charge (which is just as well – if I was paying it would be nine hundred pounds a consultation!!).

Unfortunately stocks of the vaccine were limited, and priority was given to the clinical trials. However, it seems that the vaccine is now available – today I signed the consent forms, and the plan is that I receive my first dose of the vaccine next week.

So that was further good news. All in all, this morning if someone had offered me slight disease progression, continuing with potentially effective chemo, and starting the vaccine treatment as the outcomes from today, I would have bitten their arm off. And it feels good to have had positive news for once – it renews our hope that things can go our way.

It’s still important to be realistic – this is just one ‘battle’ won in what is still an otherwise long and gruelling ‘war’. But it feels good to be on the score sheet at last with a victory.

So that’s about it for now. Chemo on Friday, Vaccine next week (hopefully), and a post about Saskia sometime soon.

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£1,000 and counting…

Hi folks – Sally here…

Whoopeeee! The total donations for my Moonlight Walk on Friday in aid of Pilgrims Hospices has reached the £1,000 target and is still going up!

I really didn’t think we’d get to a thousand pounds so quickly. Thank you SO much to all you lovely people who have donated so generously. If anyone would still like to donate, there’s plenty of time yet. Here’s the link again – www.justgiving.com/Sally-Edge

A couple of my good friends will be joining me – Janine and Lizzie (30-something weeks pregnant – go girl!). I’ll let you know how it goes.

Thanks again – you’ve made Ben and I very proud to have such generous family and friends.

Sally

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Sally’s Moonlight Walk

Still not a post about Saskia I’m afraid (I am working on it!).

This post is about Sally – who is a bit like Saskia, only bigger, and less prone to de-alphabetisising (made up word, it’s my blog, deal with it) my CDs – there are other differences, but those are the main ones.

So anyway, to get to the point…

On Friday 21st September Sally will be taking part in a ten kilometer ‘Moonlight Walk’, to raise money for Pilgrims Hospices.

Pilgrims Hospices is a charity based in East Kent, providing palliative care and other services to people in the local area, free of charge. They have three hospices in the area; Canterbury, Ashford and Thanet.

Now prior to being diagnosed back in February, my sole interaction with the word ‘hospice’ was from a conversation in the TV comedy ‘Peep Show’, that went like this…

Jeremy – “Mum rang to say my uncle Ray is a bit ill”

Mark – “Is it serious?”

Jeremy – “Dunno, he’s gone into the hospice, so I guess he’s being looked after”

Mark – “Hospice? You know what a hospice is don’t you?”

Jeremy – “Like a hospital, but nicer?”

Mark – “A hospice is where people go who are terminally ill”

Jeremy – “Oh right, Mum said he was… what you said. I’m sure he’ll be fine, he’s not a quitter”

Mark – “Well I have to say, probably not mate”

So based on this (and knowing that Peep Show is the best and most accurate source of information for most things) I associated the word ‘hospice’ purely with a place people go to die when they are terminally ill. So I wasn’t particularly excited when we were put in touch with the Canterbury Pilgrims Hospice.

However, since that moment we have discovered that they offer a whole range of services, not just ‘end of life’ care. They have been a great support to us over the last six months or so, in many different ways. I won’t write in detail here, as Sally has already explained in more depth on her ‘JustGiving’ page, which can be found by clicking on the following link…

www.justgiving.com/Sally-Edge

So yes, now I finally get to the point, this is a post asking for money!

Sally has set herself the ambitious target of raising one thousand pounds – if anyone would like to help Sally towards her target, then all donations (however big or small) are gratefully received. Following the support that we have received from Pilgrims, we both believe it is a worthy, and somewhat undervalued, cause.

Thanks to all.

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Not About Saskia

I know I promised you a post about Saskia, but I’m afraid I haven’t got round to that yet. The next one will definitely be about her (probably).

Part of the reason I haven’t got round to writing about her is that last week was chemotherapy week, so we had two trips to London – Wednesday for pre-chemo assessment clinic, and Friday to receive the actual treatment.

Both trips went well. The doctors in clinic were pleased with my progress over the last couple of months, and are hoping this represents what they call a ‘clinical response’ to the chemotherapy. In a couple of weeks I will have a CT scan to determine whether or not this is the case.

Personally I am not getting my hopes up too much, primarily because I have had them dashed too many times before. I was actually reluctant to write this on the blog, in case I was tempting fate – but I figure you’re all on this rollercoaster with me now.

It would be fantastic if it were the chemotherapy eliciting a positive response, but I am also aware that there are other things going on. I have had radiotherapy on certain areas, and a new improved ‘pain management’ regime (painkillers basically).

So it’s difficult to know what’s doing what – but fingers crossed for the chemo!

I was wondering whether I would actually get the treatment, as I have been suffering from light headedness when I stand up after long periods sitting – most likely due to the chemo killing all my red blood cells. Chemo doesn’t determine good from bad cells. It just kills all fast growing cells – cancer cells (we hope) and good cells alike. But my blood test results on Wednesday must have been ok, as I got another big dose of chemo on Friday.

The actual delivery of the treatment went well – aside from dealing with a nurse who was infinitely more interested in repeatedly informing us about her social life than paying full attention to my treatment.

“After you’re done I’m off down the Slug and Lettuce in Wimbledon for a few gins”

“I see, can you concentrate on what you’re doing please, this treatment is kind of important to me”

“Tell you what, I’ll do a manual flush so you don’t have to wait around”

“Ermm… are you sure you are doing this for my benefit, or so you can get down the Slug and Lettuce?”

The manual flush turned out to be a very easy procedure, which involved not doing any kind of flush whatsoever (a flush is where there put a small amount of saline solution down the line into your arm, to make sure you get any treatment left in the line).

I was going to write her lines in some kind of cockney accent for effect, but I decided not to for two reasons:

1 – I remembered this blog is supposed to be about accuracy and honesty.
2 – She wasn’t in the least bit cockney.

And in that spirit I should admit that I wasn’t brave enough to say my lines in that little conversation recital – I did think them though, which I believe makes me kind of brave, to a certain extent.

Anyhow, aside from that little detail, and a slightly bruised vein in the back of my hand, all was fine. Now to see if the lightheaded episodes get any worse after this dose of chemo – and the preliminary results are in… yes, it’s got worse.

In other news, I have made a little resolution – to stop moaning about my appearance.

While on the train home from London on Wednesday a little girl, maybe ten years old, got on the train with her Mum. The girl had a quite severe facial disfigurement, with most of her facial features hard to distinguish, from what looked like some kind of serious burn injury.

I looked at her, and thought that if she manages to cope with that permanent disfigurement, especially knowing how horrible kids can be to each other over the slightest little differences, then I really should not be moaning about being (hopefully temporarily) a bit fat with a round face.

Its funny how life can sometimes make you put your own problems in perspective.

This doesn’t mean that I’ve suddenly got my confidence back in my physical form, those issues won’t just go away. But it does mean that I recognise that in the grand scheme of things, it could be worse, and I should appreciate that fact.

Right, I think I will leave it there for today. Next time, Saskia!

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